Any procedure, from a lumbar puncture in the emergency department to a lung transplant operation, requires informed consent. This is when your physician sits down with you and explains the basics of the procedure as well as the benefits, risks, and alternative options. In addition, as neurosurgeon Michelle Clarke, MD, puts it, informed consent should also “include a real recommendation.”
Recently, the Stanford Department of Neurosurgery invited Clarke, from Mayo Clinic, for a guest lecture. In addition to performing complex spine surgeries, often of rare spinal tumors requiring significant reconstruction, Clarke also has interests and expertise in bioethics. Her presentation described not only the technically difficult aspects of her most interesting surgical cases but also the emotional and ethical challenges fraught in these cases.
One such challenge appears to be how best to explain the consequences of a procedure. In our conversation days after her presentation, Clarke told me that “when we state potential risks or expected deficits in plain English we don’t necessarily make the leap to encouraging patients to think what such a change means to them.”
Often, medical jargon garbles the personal significance a potential risk may pose for a patient. For one person, the risk of developing hoarseness following an anterior cervical discectomy and fusion surgery due to collateral damage to a laryngeal nerve may be a surmountable situation. For a professional singer, however, losing their voice would be life-changing.
Informed consent thus becomes more like active informed decision-making. Clarke believes that the process has moved away from a paternalistic approach to one that prioritizes patient autonomy.
At the same time, from an ethics perspective, the informed consent process also involves the core principles of beneficence, or the act of doing good, and nonmaleficence, which is also the commitment to not inflict harm. Patients are coming for advice and information, and they deserve a fair but also personalized presentation of the benefits and risks from a knowledgeable expert.
“As an example, when I consent for a lumbar discectomy I usually tell the patient there is an 85 percent chance they are happy with their surgery and notice an improvement, a 5 percent chance they are worse, and the rest is a wash," Clarke told me. "Then I literally say, in superfast car-dealer fashion, “get ready for the fine print: there is a risk of death/blood loss/spinal fluid leak/need for further surgery/blindness/incontinence, and, slow down and get their attention, a risk of injury to the nerve root which results in permanent pain, numbness and weakness that is worse than the symptoms you are having now. That’s less than 1 percent, but I can’t fix it and it’s the thing that I worry about most.”
This method breaks down the complicated surgery into bite-sized, layman’s terms that might matter more to the patient.
To me, the informed consent process isn’t one that can necessarily be standardized. Because as Clarke pointed out, even though there are benefits and risks common to each procedure, the importance of the consequences may vary depending on the patient. Now, when I approach informed consent as a neurosurgery resident, I’m more cognizant and try to elicit the patient’s particular concerns at the start before explaining the procedure in more detail. As Clarke emphasized, “every doctor, situation, patient, and illness is different.”
Adela Wu is currently a neurosurgery intern at Stanford with a longstanding interest in art, writing, and literature as well. Feel free to communicate at firstname.lastname@example.org.
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